Robert Mentzer column: Dying for a real night's sleep

Sleep affects more of our bodies' systems than most of us realize.

There is, at least among a certain workaholic class of people, a bragging tone that creeps into talk about not getting good sleep. I am so exhausted. I stayed up until 2 a.m. working on this thing and now I'm just so exhausted. You know these people.

And I can't be the only person who detects a strain of narcissism in people who take to Twitter or Facebook to complain/brag about their terrible insomnia. Look, we've all got stuff on our minds.

But let's be honest. It's one thing to stay up too late because you are working on a project or playing a video game or something - or even because you're worrying about something and have a bit of temporary insomnia. All that stuff will pass.

Imagine being awake for five days straight, then sleeping for 21 hours straight. Imagine waking up with no idea what day it is.

Kasha Oelke always had a sensitive clock. Even as a child, if she got off her sleep routine, it could take a week or more to get back into it. But by February 2011, her sleep pattern - awake for days, then asleep for 18 hours or more - had deteriorated to the point that she really could not function.

"I didn't have control of when I was going to sleep and when I was going to wake up," said Oelke, 30, of Schofield.

Oelke's son was 18 months old at the time. A single mother, she couldn't trust herself to be alone with him, so she had to move back in with her parents.

She went to the sleep lab at Marshfield Clinic and stayed 24 hours. The diagnosis: hypersomnia.

But it turns out "hypersomnia" is not much of a diagnosis; it's more of a big, catch-all term for people whose sleep is messed up. Oelke went through a battery of psychological tests to rule out things like bipolar disorder or depression that can cause some of these symptoms. And since then, she has been on a difficult journey of medications and more medications, doctor visits and confusion as she has tried to re-establish a regular 24-hour sleep cycle, something she said her body is fighting against.

"Every cell in (my) body is programmed to be at a different time schedule than 24 hours a day," she said. "It's not natural for me."

The medication she's on now has her on a somewhat regular schedule. She wakes up at the same time every day. But she often doesn't feel awake, she said. She doesn't get restorative sleep and still has to take multiple naps during the day.

"My energy level usually (allows for) two or three tasks a day," Oelke said. "If I'm having a good day, I can cook or I can take care of my son. But by 4 p.m., I'm done."

Oelke didn't want her picture in the newspaper because she has gained more than 100 pounds since her disorder became severe. And she's had all manner of physical ailments - skin lesions, infected tear ducts - that have their roots, basically, in the fact that she hasn't slept. The body relies on sleep - real, restorative, regular sleep - in more ways than we realize. Oelke said she wanted to have her story told in the paper because there is little understanding of sleep disorders and she wants more people to know what they really are like.

When my son, Forrest, was less than a year old, he was a terrible sleeper. Both of us had gone back to work, but his sleep just didn't get better, and we lost our minds getting up every half-hour with him. A few nights, we wrote down exactly when he was asleep and when we woke. On a bad but not atypical night when he was 9 months old, he woke up 17 times, if you believe our sleep-addled scrawls.

It was a hard time. But Forrest got older and slept better and we got back, more or less, on a regular schedule. It was a hard time, but it did not last for the rest of our lives.

For Oelke, it will. What she hopes for is to find the right medications to control her symptoms and allow her to stay on a regular schedule, even if she is still so exhausted much of the time that it hurts. She's found a community online of people with similar disorders. And there is a part of her, a small part, that tries to search for a silver lining in her condition.